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This series includes policy-focused books on the role of the public and private
sectors in advancing quality of life and well-being. It creates a dialogue between
well-being scholars and public policy makers. Well-being theory, research and
practice are essentially interdisciplinary in nature and embrace contributions from
all disciplines within the social sciences. With the exception of leading economists,
the policy relevant contributions of social scientists are widely scattered and lack the
coherence and integration needed to more effectively inform the actions of policy
makers. Contributions in the series focus on one more of the following four aspects
of well-being and public policy:
• Discussions of the public policy and well-being focused on particular nations and
worldwide regions
• Discussions of the public policy and well-being in specialized sectors of policy
making such as health, education, work, social welfare, housing, transportation,
use of leisure time
• Discussions of public policy and well-being associated with particular population
groups such as women, children and youth, the aged, persons with disabilities and
vulnerable populations
• Special topics in well-being and public policy such as technology and well-being,
terrorism and well-being, infrastructure and well-being.
This series was initiated, in part, through funds provided by the Halloran Philan-
thropies of West Conshohocken, Pennsylvania, USA. The commitment of the
Halloran Philanthropies is to “inspire, innovate and accelerate sustainable social
interventions that promote human well-being.” The series editors and Springer
acknowledge Harry Halloran, Tony Carr and Audrey Selian for their contributions
in helping to make the series a reality.
Jennifer L. Johs-Artisensi • Kevin E. Hansen

Quality of Life
and Well-Being for Residents
in Long-Term Care
Communities
Perspectives on Policies and Practices
Jennifer L. Johs-Artisensi Kevin E. Hansen
Department of Management Department of Health Care Administration
and Marketing and Public Health
University of Wisconsin–Eau Claire Bellarmine University
Eau Claire, WI, USA Louisville, KY, USA

ISSN 2522-5367 ISSN 2522-5375 (electronic)

Human Well-Being Research and Policy Making
ISBN 978-3-031-04694-0 ISBN 978-3-031-04695-7 (eBook)
https://doi.org/10.1007/978-3-031-04695-7

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I dedicate this book to my family and friends
who have supported me throughout the
writing process.
My husband, John, has always encouraged
my professional pursuits, as he picks up extra
responsibilities at home and keeps me
caffeinated, fed, and comfortable when I’m
writing at nights and on weekends.
As I’ve worked on this book, my incredible
children, Alexis and Evan, have sacrificed
time with me, but I hope they have seen that
with education, determination, and a strong
work ethic, they can do hard things.
I’m so appreciative that my friend Kevin
agreed to co-author this book with me—
deciding to tackle this together is what made it
feel possible.
My other biggest cheerleaders have been my
sister, Stephanie, my parents, Carol and
Perry, and my friend Lindsey—so thank you
for all your words of encouragement along the
way.
I fell in love with working with older adults in
my 20s and their unique stories changed the
trajectory of my career, but one incredible
older woman has been an inspiration and role
model for my entire life—my grandma Melba.
She taught me that a strong, independent
woman can do anything, including living her
long, final chapter with love, family, meaning,
and peace.
Growing older is both a challenge and a
privilege. We can all play a role in maximizing
older adults’ quality of life and well-being as
they continue their journey through the life
course.
—Jennifer L. Johs-Artisensi

To my work colleagues and friends, my

sincere thanks for helping carry the load and
for being a constant source of inspiration and
wisdom for improving care and quality of life
for older adults.
To my friends, too innumerable to list here,
thank you for keeping me grounded and for
making me take a break now and again for an
adult beverage.
To my co-author “Johs,” thanks for putting
up with me, for our long Zoom calls making
each other laugh, and for being a constant
cheerleader to work on this book, an
undertaking I would not have considered
without your willingness to jump in and
partner on. We’re even, now.
To my dog Thor, destroyer of books and
master of sass, we are done with the long
weekends in the office, buddy. Thanks for
napping and snoring loudly under my desk to
keep me company.
Lastly, and most importantly, to my mom
Sheri—quite possibly the most amazing social
worker and grandma that I know—thank you
for listening to me, pushing me to be my best,
caring for others as much as you do, and for
always being there when you were needed.
Love you more than you know, lady.
—Kevin E. Hansen
Acknowledgement

Sadly, after completing final edits on our manuscript, but prior to its publication,
Dr. Kevin Hansen unexpectedly passed away, way too soon. His passion for
education, research, and elder care rights has already improved care and services
for older adults, and he will continue to effect positive change as his knowledge and
desire to enhance the lives of older adults is shared through this book. Although he
still had so much left to do in this world, his reach will continue, as everyone who
knew him carries his influence in their heart.

ix
Author’s Note

Jennifer L. Johs-Artisensi, Department of Management and Marketing, University of

Wisconsin—Eau Claire, Eau Claire, WI. Kevin E. Hansen, Department of Health
and Aging Services Leadership, College of Health Professions, Bellarmine Univer-
sity, Louisville, KY.
The content included in this book has been independently produced by the
authors based on their experience, knowledge, and research into existing literature
and studies. To date, the authors have received no specific grant, financial support, or
reimbursement for the research, authorship, or work toward publication of this
submission from any funding agency in the public, commercial, or nonprofit sectors.
Any correspondence concerning this content should be addressed to: Jennifer
Johs-Artisensi, Department of Management and Marketing, University of Wiscon-
sin—Eau Claire, 105 Garfield Avenue, Eau Claire, WI 54702.
Email: [email protected]

xi
Contents

1 Quality of Life in Long-Term Care . . . . . . . . . . . . . . . . . . . . . . . . . . 1

1.1 Aging Demographics across the Globe . . . . . . . . . . . . . . . . . . . . 2
1.2 Defining “Good” Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . 3
1.3 Long-Term Care Communities . . . . . . . . . . . . . . . . . . . . . . . . . . 4
1.4 The Decision to Move into a Long-Term Care Community . . . . . 6
1.5 Influence of Quality of Life on Other Metrics . . . . . . . . . . . . . . . 8
1.6 Enhancing Resident Quality of Life . . . . . . . . . . . . . . . . . . . . . . 8
1.7 Quality of Care Vs. Quality of Life . . . . . . . . . . . . . . . . . . . . . . 10
1.8 Balance between Safety and Autonomy . . . . . . . . . . . . . . . . . . . 12
1.9 Resident-Defined Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . 13
1.10 Quality of Life Domains . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
2 Resident Autonomy, Dignity, and Respect . . . . . . . . . . . . . . . . . . . . . 23
2.1 Respect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
2.2 Autonomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
2.3 Dignity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
2.4 Sense of Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
2.5 Promoting Respect, Autonomy, Purpose, and Dignity in Residential
Care Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
2.5.1 The Golden Rule . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32
2.5.2 Autonomy, Choice, and Control . . . . . . . . . . . . . . . . . . . 34
2.6 Essential Influencers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39
2.6.1 Nurses and Nurse Aides . . . . . . . . . . . . . . . . . . . . . . . . . 39
2.6.2 Social Workers and Admissions Directors . . . . . . . . . . . . 40
2.6.3 Activities Directors and Aides . . . . . . . . . . . . . . . . . . . . 40
2.6.4 Dietary Directors and Aides . . . . . . . . . . . . . . . . . . . . . . 40
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
3 Relationships with Other Residents, Staff, and Family Members . . . 45
3.1 Peer Relationships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46

xiii
xiv Contents

3.1.1 Care Recipients Are Unique . . . . . . . . . . . . . . . . . . . . . . 48

3.1.2 How Residents Develop Peer Relationships . . . . . . . . . . . 49
3.1.3 Potential Barriers to Peer Relationships . . . . . . . . . . . . . . 50
3.1.4 Facilitating Positive Peer Relationships . . . . . . . . . . . . . . 50
3.2 Resident-Staff Relationships . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
3.2.1 How Resident-Staff Relationships Develop . . . . . . . . . . . 54
3.2.2 Optimizing Resident-Staff Relationships . . . . . . . . . . . . . 55
3.3 Resident-Family Relationships . . . . . . . . . . . . . . . . . . . . . . . . . . 60
3.3.1 Family Member Roles . . . . . . . . . . . . . . . . . . . . . . . . . . 61
3.3.2 Facilitating Resident-Family Relationships . . . . . . . . . . . 62
3.4 Romantic Resident Relationships . . . . . . . . . . . . . . . . . . . . . . . . 68
3.4.1 Supporting Romantic Resident Relationships . . . . . . . . . . 69
3.5 Essential Influencers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
3.5.1 Nursing and Direct Care Staff . . . . . . . . . . . . . . . . . . . . . 71
3.5.2 Social Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
3.5.3 Activities Director and Aides . . . . . . . . . . . . . . . . . . . . . 72
3.5.4 Dining Staff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
3.5.5 Volunteers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
4 Activities and Religious Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
4.1 Psychosocial Benefits of Activities . . . . . . . . . . . . . . . . . . . . . . . 78
4.2 Frequency and Variety of Activities . . . . . . . . . . . . . . . . . . . . . . 81
4.3 Adapting Activities for Residents with Impairments . . . . . . . . . . 89
4.4 Religious and Spiritual Activities . . . . . . . . . . . . . . . . . . . . . . . . 91
4.5 Essential Influencers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
4.5.1 Activities Director . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
4.5.2 Activity Aides and Volunteers . . . . . . . . . . . . . . . . . . . . 94
4.5.3 Social Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94
4.5.4 Therapists . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
4.5.5 Clergy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
5 Environment and Surroundings . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
5.1 Use of Homelike Design Principles . . . . . . . . . . . . . . . . . . . . . . 100
5.1.1 Homelike and Hospitable Care . . . . . . . . . . . . . . . . . . . . 102
5.1.2 Resident Bedrooms . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104
5.1.3 Design of Communal Spaces . . . . . . . . . . . . . . . . . . . . . 111
5.1.4 Environmental Comfortability . . . . . . . . . . . . . . . . . . . . . 120
5.2 Creating Safe and Functional Access to the Outdoors . . . . . . . . . 124
5.3 Environmental Considerations for Residents with Dementia . . . . . 127
5.4 Essential Influencers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
5.4.1 Social Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
5.4.2 Maintenance Personnel . . . . . . . . . . . . . . . . . . . . . . . . . . 131
5.4.3 Nursing and Direct Care Staff . . . . . . . . . . . . . . . . . . . . . 131
Contents xv

5.4.4 Activities Director . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132

5.4.5 Dining Staff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132
6 Food and Dining . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
6.1 Aging Changes that Affect Food Consumption . . . . . . . . . . . . . . 136
6.2 Quality of Food and Menu Options . . . . . . . . . . . . . . . . . . . . . . 139
6.3 Modified Diets and Changes to Food Preparation for Resident
Health Conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142
6.4 Improving the Dining Experience . . . . . . . . . . . . . . . . . . . . . . . 143
6.5 The Dining Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147
6.6 Essential Influencers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 150
6.6.1 Dieticians and Dietary Managers . . . . . . . . . . . . . . . . . . . 150
6.6.2 Medical Director and Therapists . . . . . . . . . . . . . . . . . . . 150
6.6.3 Dietary Aides . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
6.6.4 Nurse Aides . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152
7 Quality of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155
7.1 Quality of Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157
7.2 Intersection of Care and Quality of Life . . . . . . . . . . . . . . . . . . . 159
7.3 Measuring and Assuring Quality . . . . . . . . . . . . . . . . . . . . . . . . 162
7.4 Providing Quality Resident Care and Therapy Services . . . . . . . . 164
7.5 Care Planning for Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167
7.6 Transfers between Care Settings . . . . . . . . . . . . . . . . . . . . . . . . 169
7.7 Essential Influencers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170
7.7.1 Medical Director and Director of Nursing . . . . . . . . . . . . 170
7.7.2 Nursing Staff and Nurse Aides . . . . . . . . . . . . . . . . . . . . 171
7.7.3 Therapists and Service Staff . . . . . . . . . . . . . . . . . . . . . . 171
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
8 Summary, Policy Recommendations, and Conclusions . . . . . . . . . . . 175
8.1 Care Recipients Should Direct their Care . . . . . . . . . . . . . . . . . . 176
8.2 Administrators as Champions and Chief Influencers . . . . . . . . . . 177
8.3 Organizational and Leadership Support . . . . . . . . . . . . . . . . . . . 180
8.4 Opportunities for Government Licensure and Regulatory
Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181
8.5 The Imperative and Charge to Improve Resident Quality
of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 183

Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 185
About the Authors

Jennifer Johs-Artisensi is a Professor and Academic Program Director for the

Health Care Administration Program at the University of Wisconsin-Eau Claire, and
Director of the National Emerging Leadership Summit. She has a master’s degree in
public health and a PhD in health psychology and behavioral medicine. She has
worked as both a practitioner and a consultant in settings across the care continuum.
Her research interests include resident-focused care, “culture change” and quality of
life in long-term care, health care policy, health and long-term care management,
health care administration education, and leadership development. In the USA, she
has served the National Association of Long Term Care Administrator Boards
(NAB), in multiple capacities, and is the current Chair-Elect of the NAB Executive
Committee. She developed an online preceptor training course for NAB, which is
used nationwide. She has earned several honors for both her research and service in
long-term care, including several Distinguished and Best Paper awards for research
on developing educational models to best prepare future long-term care administra-
tors and delivering quality care. She also received the Leon Brachman Award for
Community Service, and faculty awards for excellence in service-learning, creativity
and innovation, and outstanding teaching.

Kevin Hansen is an Associate Professor and Chair of the Department of Health

Care Administration and Public Health at Bellarmine University. His research
primarily focuses on quality of care and quality of life in nursing homes, as well
as abuse and neglect of vulnerable adults and substitute decision-making with
powers of attorney, health care directives, and guardianships and conservatorships.
Dr. Hansen has taught courses related to health law and policy, quality improvement
in long-term care organizations, leadership in health care settings, ethical and legal
issues in aging, elder abuse and neglect, legal issues within health care administra-
tion, risk management in health care, and long-term care facility operations. Dr.
Hansen has previously taught at the University of Wisconsin-Eau Claire and at the
University of South Florida. He has worked as an attorney and ombudsman special-
ist with the Minnesota Ombudsman Office for Mental Health and Developmental

xvii
xviii About the Authors

Disabilities, and as an attorney and victim advocate at the ElderCare Rights Alliance.
He has worked in the areas of elder and disability law conducting research and
pursuing legislative reform in Minnesota. Dr. Hansen earned his PhD in Aging
Studies from the University of South Florida, a Juris Doctor from the William
Mitchell College of Law, and a Master of Laws in Elder Law from the Stetson
University College of Law.
List of Figures

Fig. 1.1 From pyramid to pillar: a century of change (population of the

United States). National Population Projections, 2017. United
States Census Bureau, Department of Commerce . . . . . . . . . . . . . . . . . . . 2
Fig. 1.2 Global Population by Broad Age Group, in 1980, 2017, 2030, and
2050. United Nations, World Population Prospects: The 2017
Revision (2017) . .. . . .. . .. . .. . .. . . .. . .. . .. . . .. . .. . .. . .. . . .. . .. . .. . . .. . .. . 3
Fig. 1.3 A shared room in Windsor Park Nursing Home, Jamaica, New
York. Photo Credit: Gottscho-Schleisner Collection, Library of
Congress, Prints and Photographs Division . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Fig. 1.4 A double loaded corridor leading to the nurse’s desk in Windsor
Park Nursing Home, Jamaica, New York. Photo Credit: Gottscho-
Schleisner Collection, Library of Congress, Prints and Photographs
Division . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Fig. 1.5 A depiction of the continuum of care of selected long-term service
and support settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Fig. 2.1 At the intersection of autonomy, respect, and dignity is the sense of
feeling human .. . . . .. . . . .. . . .. . . . .. . . . .. . . .. . . . .. . . . .. . . .. . . . .. . . .. . . . .. . 24
Fig. 2.2 Excerpt from the Preferences for Everyday Living Inventory
(PELI)—Nursing Home version. Developed by Kimberly van
Haitsma (2019) (CC BY-ND 4.0) . . . .. . . . . . .. . . . . . .. . . . . . . .. . . . . . .. . . . 27
Fig. 2.3 A caregiver assists a resident who is highly dependent for care. The
more highly dependent for care long-term care residents are, the
more reliant they are on caregivers to facilitate their autonomy.
Photo Credit: Truth Seeker . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
Fig. 2.4 While the “golden rule” often applies to staff members, residents
can be a beacon of positive support and advocacy for each other, as
well. Photo Credit: Eberhard Grossgasteiger . . . . . . . . . . . . . . . . . . . . . . . . . 32
Fig. 2.5 Connecting with care recipients honors their essence, helping them
feel value and self-worth. Photo Credit: Truth Seeker . . . . . . . . . . . . . . 39

xix